Parkinson’s Disease Care – Gaps and Inequalities Identified

A recent study has uncovered important gaps in care for patients with Parkinson’s disease (PD) in the United States, including inequities impacting women, people of color (Asian, Black, Hispanic, and Native American), and rural inhabitants. The peer-reviewed study, published in the scientific journal npj Parkinson’s Disease, examines demographics, service consumption patterns, and inequities in care access for people living with Parkinson’s disease.

“By utilizing 2019 Medicare data that represents 90% of people living with Parkinson’s in the U.S., this research provides the most timely and comprehensive study of patients with PD yet conducted,” said James Beck, Ph.D., senior author of the study and chief scientific officer for the Parkinson’s Foundation. “These findings underscore the need for better training of general neurologists and other care providers treating people with PD.”

The big study population also allowed for a more in-depth examination of disparities in care for categories previously excluded from Parkinson’s disease studies. The Parkinson’s Foundation, NORC at the University of Chicago, The Michael J. Fox Foundation for Parkinson’s Research (MJFF), and co-author Allison Willis, MD, MS, MDS, an associate professor of Neurology at the Perelman School of Medicine at the University of Pennsylvania, collaborated on the study.

Among the important findings are:

Only 9% of persons with Parkinson’s disease (PD) received care from movement disorder specialists (MDS), who are highly trained neurologists who can recognize the subtleties of PD and personalize therapy to each patient.
The remaining 50% of persons with Parkinson’s disease were treated by general neurologists, while 29% were treated by primary care clinicians.
Care access inequities continue for women, people of color, and rural dwellers, all of whom may have difficulties accessing diagnosis and treatment.
Despite the fact that depression affects 53% of persons with Parkinson’s disease, just about 2% received therapy from a mental health expert.
Supplemental therapies, such as physical and occupational therapy, speech-language therapy, and mental health services, were underutilized, with just 20% of patients with Parkinson’s disease seeing a physical therapist, for example.

“This impactful analysis reveals the significant gaps in access to both recommended and best practice care for PD,” said Willis. “Also, our scientific reporting and understanding of PD has focused on specialty center populations, which these data suggest are a minority of the PD population. Persons who are not accessing recommended or best practice care are likely to experience PD very differently.”

The decision to focus on data in 2019 was motivated by a desire to focus on care access trends prior to the disruption in care access caused by the COVID-19 pandemic in 2020. The data’s timeliness provides a pre-COVID baseline, which could aid future studies investigating changes that occurred during the pandemic.

“While a lot of work remains in order to provide expanded care services for people and families living with PD, this is a critical step in understanding the disparities in access to expert care across populations,” said Ted Thompson, JD, MJFF’s senior vice president of public policy. “Studies like this can paint a fuller picture on the public policy priorities that all people with PD and their families need to live a better quality of life with the disease.”

According to the Parkinson’s Foundation, one million persons in the United States have Parkinson’s disease, and this figure is anticipated to climb to 1.2 million by 2030. There are now just 660 MDS in the United States, with a total of six practicing in rural areas. There aren’t enough professionally qualified professionals to go around to treat the disease’s rising population.

Due to the scarcity of MDS, finding care might be difficult, with long appointment wait times and unacceptable travel distances. There are potential to extend PD-specific training for healthcare professionals and pursue initiatives that improve access across all population categories to improve access to specialized care. These findings will aid policy creation and future study into access challenges experienced by beneficiaries, particularly those who may not live near the most highly skilled professionals.

“Being able to work with a team of specialists who are knowledgeable about Parkinson’s disease has made a tremendous difference for me and my family,” said Richard Huckabee, who lives with PD and regularly sees an MDS and attends PD-specific exercise classes and support groups. “Whether you’re newly diagnosed or have been living with PD for a while, I encourage you to seek the support you need so you can live better with PD.”

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